HARTFORD, Conn. - Katherine Snedaker says she has had 20 concussions, the first three decades ago from a car accident when she was 16. But it wasn't until her son suffered a series of concussions in the sixth grade, around 2008, that she felt compelled to learn all she could about head injuries to help him recover.
During her journey of learning, she has become a nationally known advocate for better research, medical care, and support for girls and women with brain injuries, including concussions.
She founded her non-profit advocacy group PINK Concussions in 2013 in response to what she discovered was a lack of information and research on female concussions. She formed the group during a yearlong medical leave to treat breast cancer and while rebuilding her home, damaged by Superstorm Sandy.
Some studies show females suffer more concussions than males when playing similar sports. Doctors agree more research is needed on any gender differences and whether women experience more severe symptoms or take longer to recover.
Most research has focused on men, especially dozens of former football players who died from a degenerative brain disease that has been linked to concussions.
"There's a lot we don't know," said Snedaker, 49, a licensed clinical social worker who gave up her regular job to advocate full-time at her own expense. "What I wanted to do was educate the public."
Snedaker has sought to keep a light shining on the need for more research, better medical care, and more community support for girls and women with concussions and other brain injuries suffered through sports, military service, domestic violence and accidents. She has organized several conferences that have brought together medical experts and military leaders she has met, done dozens of media interviews, and launched a website — Pink Concussions — to share information.
In March, Pink Concussions will hold its second annual international summit on female concussions and traumatic brain injuries; it will be hosted by the National Institutes of Health.
"Katherine has done a lot of great work as an activist," said Dr. Zachary Kerr, an assistant professor in exercise and sport science at the University of North Carolina and former director of the NCAA's injury surveillance program.
"There are all these different theories out there about why concussions are higher in women than in men, but we really don't know why," he said. "We need more data collection. We need more surveillance at all levels. We need to get more information out there."
Snedaker, Kerr and other advocates and doctors are optimistic about a $30 million, three-year study being done by the NCAA and the Department of Defence. The study is billed as the largest ever of concussion in sports, involving more than 25,000 student athletes. Preliminary results are expected to be released in late January.
Dr. Brian Hainline, chief medical officer of the NCAA, said it also will be the largest-ever study of female concussions. The results may lead to sports rule changes and international guidelines on prevention and treatment, he said.
A major impetus to Snedaker's activism has been hearing stories in support groups and in surveys from women and girls suffering from concussions. Many shared similar stories of not healing as fast as people thought they should, doctors minimizing their conditions and feeling isolated while recovering at home, she said.
"These girls had been cycled through the medical community and kind of spit out," Snedaker said. "What totally got me were these women who were isolated and alone."
Snedaker said she suffered her concussions in a series of accidents, but has been lucky not to develop permanent symptoms. Other sources of her concussions include a car accident in college, being hit by a lacrosse ball, hitting her head on a door frame and slamming her head against a wall while flopping onto a bed, she said.
"These are all total screw-up accidents," she said.
Her son's concussions, suffered in soccer, skateboarding and lacrosse, spurred her to research head injuries, contact experts and attend medical conferences. She went on to start support groups and educational websites, as well as co-found and work in concussion clinics. It was in the clinics where she began to hear the girls' stories.
She has pledged to donate her brain to medical researchers when she dies.
"It's adjusting attitudes," she said. "It's educating women."